Damaged...knowing the future that lies ahead

after working successfully for the life i wanted, unknowingly on my own, once achieved, i sit here on my property with 3 horses and no ability to care for the place... who would have ever thought this would be my life? my earlier life was a successful life of riding and training horses as well as working as a therapeutic riding instructor to people with disabilities... now i am that person. no family, no husband.. i live it alone. yesterday, my Rheumatologist informed me that he can no longer help my situation due to long term joint damage which has already begun to cripple me at 50. my doctor wants to refer me to orthopedic specialists.. = surgeries. what do i have to look forward to? there are days where i am unable to walk, care for myself, but there is no one to call, no support system... i am on disability, but am unable to get health insurance due to pre existing clause. what future do i have? my house needs attention which i am not strong enough to give...what will happen? i have been stronger than i even knew i could be...but the reality is doom. what should i do? what if any options do i have? i am scared...



John "JC" Colyer said:

After 2 yrs on disability you are eligible for Medicare, no pre existing.

i dont qualify for medicaid because i make a little more than the $900. cut off from disability

Hello moondance,

How you qualify for medicad i don't know as i live in the UK only other member's may be able to help.

I'm in similar position as yourself like Ang (draginfli) as also stated besides many more member's and at the moment it sounds like you've got depression set in bad from the Lupus which it can cause and for so many of us.

I've never had much of a life... started work when i left school at 16 and at 18 two forms of seizures started, having over 18 of those a day i spent more time in hospital than anywhere else besides coma's, then at 24 i had 2 chronic strokes totally paralized besides losing my speech and was layed up in a bed for 4yrs and being told i'd never walk again but with determination from my dad mainly concerning my walking i got there, then not long after being told i'd been born with cervical spondylosis besides having muscle wastage and a disfigured back and spine, i've broke my pelvis twice through seizures and then having DVT bad which nearly killed me but as left me with Hughes syndrome, then the stokes left me with Todds-paralsis where i go paralized at times, besides brain damage to the right side of my head ...there's more i could add regarding ailments and places i've had to attend.

What i'm mainly trying to point out to you and i'm nearly 44 this year, is 5yrs ago my skin took very bad and i was diagnosed with DLE/SLE, i've got A1 Diseases overlapping autoimmune diseases, i've had biopsy's and 6 operations regarding Lupus and my days are spent if not going paralized on a 3 wheeler rollator/ wheelchair and if i need to get out an electric scooter.

I sincerely know where your coming from having no one, yes i have my hubby now who i cherish dearly besides LWL my 2nd family in my eyes for true love and support but before that i lived alone and struggled hard to carry on and that's what you must do and try your hardest not to give up because spending those 4yrs lying in a bed constantley being cared for made me feel inadequate especially when personal issues had to be dealth with regarding my body....life is worth living if you look for the right aspects and if your joints are to be operated on they could make your disability alot better....there's always a "Large" ?... to why things happen in life but they do.

Moondance although this disease comes with many aspects and causes many issues...life is still worth living, as it makes me look at people in much worser situations.

((A large hug to you)) Loads of love Terri xxx

I know we are mostly weak and unable to do much more than listen...but if you are here Moondance, you are not alone anymore.

Be safe,

Kayhlan

I can't get disability because my husband makes too much an hour but only works 32 hours a week, he makes $1.50 more an hour than they allow. the only way I could get on it would be a legal separation or divorce and we have been together for 33 years. His insurance at work don't pay anything we pay the $5,000 deductible and there is no way we can pay for that. We struggle to pay for what med's that I'm on, insurance wont pay unless they are generic and then they only pay $5.00 or less on them. Any suggestions for me?

I’m so sorry to hear about your situation. It’s ok to grieve what you’ve lost, but don’t lose hope. I’m sure that there are people in your local church that would be willing to help you. There are some churches out there that really show the love of God to people in need.
I didn’t qualify for health benefits, but I did qualify for this insurance. Maybe it will work for you. It’s a new government program for people with pre-existing conditions. https://www.pcip.gov/

Stay hopeful.

Hi Becky,

33yrs of marriage is lovely and i wish with all my heart i could give advice concerning your situation but like i stated to moondance i'm in the uk.

Love Terri xxx

Becky F said:

I can't get disability because my husband makes too much an hour but only works 32 hours a week, he makes $1.50 more an hour than they allow. the only way I could get on it would be a legal separation or divorce and we have been together for 33 years. His insurance at work don't pay anything we pay the $5,000 deductible and there is no way we can pay for that. We struggle to pay for what med's that I'm on, insurance wont pay unless they are generic and then they only pay $5.00 or less on them. Any suggestions for me?

Hi Angela,

Besides churches and feeling benefit from it that way...all they offer otherwise in the UK is councilling for it, never heard nothing like it, people who suffer need to share not sit with a councillor.

Love Terri xxx

draginfli said:

Worshipgirl,

Grieving is good - it is healthy. I wonder if we have anyone in our community who might have a background in helping folks grieve with God? I know that I could use all the help anyone has to offer!

Thanks,

Angela

worshipgirl said:

I'm so sorry to hear about your situation. It's ok to grieve what you've lost, but don't lose hope. I'm sure that there are people in your local church that would be willing to help you. There are some churches out there that really show the love of God to people in need.
I didn't qualify for health benefits, but I did qualify for this insurance. Maybe it will work for you. It's a new government program for people with pre-existing conditions. https://www.pcip.gov/

Stay hopeful.

thank you I will go to their website right now and check it out.....I'll keep you posted

draginfli said:

Also Becky... I have no insurance and searched far and wide for an online pharmacy that I could use to get me 90 day prescriptions at a reasonable rate without insurance. I investigated the online pharmacies because I didn't want to deal with one of the "illegal" ones. I wanted one with the high ratings of a regular pharmacy like CareMark or CVS or Walgreens, but also one who had great discounts. I did finally find one and they have been amazing from their prices, to their help support. If I have a question and email the support folks, they get back to me within a few hours and the actually RESOLVE my issue. They made a mistake once and Immediately gave me a credit PLUS they credited me an extra $25 for my hassle! THEN they overnighted at THEIR expense my medications! They are really a great place to work with. They have all the seals of approval and are based out of Kentucky.

The place is HealthWarehouse.com. I have been saving a ton of money with them and the two docs who prescribe for me are now referring them to their other patients who do not have insurance. I am lucky to have docs who are standing by me while I wait for SSD approval. They are prescribing my meds using "phone" appointments and are not charging me for their time or for prescribing my meds to keep me as level as possible.

I'm willing to put my name on the line to recommend this online company because my experiences have all been positive. And like I said, If I even have a tiny little question - they go out of their way to answer it AND make sure I understand what they have told me with follow up emails - quickly! I honestly have never had that type of online support from any company. Even the companies I've worked for myself.

I sound like a salesperson for them, but I have no affiliation and get nothing for referring them. It will save you some money though if you don't have insurance. You can check the prices before you order anything too. www.healthwarehouse.com

Draginfli

Becky F said:

I can't get disability because my husband makes too much an hour but only works 32 hours a week, he makes $1.50 more an hour than they allow. the only way I could get on it would be a legal separation or divorce and we have been together for 33 years. His insurance at work don't pay anything we pay the $5,000 deductible and there is no way we can pay for that. We struggle to pay for what med's that I'm on, insurance wont pay unless they are generic and then they only pay $5.00 or less on them. Any suggestions for me?

I can also relate, my legs and the shortness of breth has kept me very disabled as well, I am hoping to win my ssi case, because I have no income at all and my husband has been out of work for 3 years. Thanks to the Lord things have not been as tough as I thought. God will provide for your every need. Many blessings and hugs.

Moondance, I know it seems bleak now, but I find solace in the phrase "its darkest before the morning" just look around and think how you can continue supporting yourself until the medicaid kicks in, don't give up that fight, because you will then find doctors that are great and will help. As far as the ranch, can you try to rent it out for parties, not for profits, corporate ventures like to use ranches for "back to nature" fundraisers. It might take energy but, reach out to those around you for help. Financially, with three horses, you must have land, so try to rent it out for parties, etc, in the agreement state all partygoers must clean up after themselves and set up by themselves, you are only renting the land. Enroll high school students to help take care of the horses as part of service learning credits, needed to graduate from High School nationwide. Students seek these unpaid opportunities year round and I am sure would love to work on a farm.

Don't give up, we are all going through stress and trying to find the balance between health and wellness.

I'm kind of confused, BUT let me say first that although I may not have been in the exact same circumstances, I have had a long uphill battle as well and am not quite ready to check out yet, therefore something inside me keeps me hanging on. I hope and pray that you can find that something too. I have been in the dark place where I did not think I had a way out....but with help from benefits, etc...I am still here...somehow. They looked at my quarters that I had worked when I got SSD....my husbands income wasn't the factor, not for SSD,( NOT MEDICAID...although I don't know why you wouldn't qualify for that....but different states have diff laws, so I'm not sure on that, but it might be worth checking further.)Once I had this(SSD)...and that was not easy...3 yrs later, then other programs fell into place. Nurses that come over, PT if needed, OT if needed, etc....I lost my job, had to drop out of school and start over, and to no avail after all that couldn't manage the job that I got after all that ;( Anyway, plz don't give up. Somewhere out there, there is help for you. Living with your parents must be absolutely draining for you and I give you all the credit in the world for swallowing your pride...not that you had a choice....but still, you DID it...sometimes we must just take those steps even though we are kind of blindly walking, and eventually we can walk on our own.....with dignity. This is NOT what I had planned for my life at all, but it's better than what it could be........I do have a husband and some family, but ya know most men would've given up and walked out when the doctors said I couldn't drive, or worse yet, COOK..lol I feel for you not having that support, I really do, but you've accomplished sooooo much on your own, you can do this too ;)

Plz, hold your head up, if you can, and if you can't we'll help you.....the angels are with you.....just reach out

hugs...gentle

angel

thankyou angel, i live alone, my parents are gone and i have no family, no husband, i guess thats what makes it scary...no one. at age 50.. kinda pathetic huh? my animals, my dogs have saved my life so far... but right now i have limited mobility because my low back is now involved from joint destruction, so walking is tough. just keep saying this will get better...but in reality it is getting worse, i need medicine and an mri, but have no money, soo i am very scared about whats happening.

God bless you for your inspiration,

Amy/Moondance

I hope you don't think I was being condescending, becuz I wasn't. You have some very serious problems, and no-one would blame you for being scared.....I would be scared too if I was alone. My worst fear is that something could happen to my husband. The other thing I think about is those with this awful disease that have children. I don't know how they do it. The problem is if you let yourself slip into that deep depression, it could be very damaging to you and your health, and I wouldn't want to see that happen....I've been there and it's sooo very hard to climb out ;( I have ddd, herniated disks, spinal stenosis, skoliosis, pinched nerves, and currently a broken back due to osteoporosis from steroids....grrr Then of course Lupus, RA, Diabetes, and Addison's. I use a rollator walker and a wheelchair. As I said, this is not how I pictured my life.....far fr it. I was in nursing school and had to quit becuz my doc would not release me to work (due to lifting) which I had to do. So, I started over majoring in Psych. I had a cervical fusion, and 4 yrs later I went to work for 10yrs at a Mental Health facility. My job required a lot of physical work as I worked with critical clientele that had just been released into the community fr a locked facility. My lower back finally went and I would sit at the bottom stair crying cuz i couldn't get up the stairs ;( Eventually went for a MRI and YUK....they found the probs I mentioned above. This doesn't make either of us better or worse, we both have hills to climb and long roads to walk...one step at a time. Oh, and my dog...my best friend...I don't know what I would do w/o him. It's as though he knows somethings wrong and he lays with me on the bed...right next to me....supporting my back!

I will pray that doors open up for you, and plz use this board to lean on and get support...we care and are always here ;)

lots and lots of luck and I am praying for you.

The angels are with you still

love and hugs

angel

moondance said:

thankyou angel, i live alone, my parents are gone and i have no family, no husband, i guess thats what makes it scary...no one. at age 50.. kinda pathetic huh? my animals, my dogs have saved my life so far... but right now i have limited mobility because my low back is now involved from joint destruction, so walking is tough. just keep saying this will get better...but in reality it is getting worse, i need medicine and an mri, but have no money, soo i am very scared about whats happening.

God bless you for your inspiration,

Amy/Moondance

I don't about other states, but in IN Medicaid will pay the premiums for Medicare if the client cannot pay them....

Thanks for the post, you are my hero Ann... Keep the positivity coming... You brightened my day, I was a bit depressed earlier today. Thank you to Moodance for opening this channel to talk about the problems seen through variety of struggle for lupus.

Ann A. said:

Dear Moondance,

I am 65 years old. I was dx with lupus at age 21. I FEEL 1000x BETTER THAN I DID AT 50. At age 50 my mobility was extremely limited by knee and back problems. I have had three total knee replacement surgeries. I had spondylosis (degenerative disk disease, facet syndrome and spinal stenosis). In October 2011, I had surgery for the spinal stenosis. Your future is not as bleak as it may seem. When you have accessed the available services the future will be brighter.

Thank you for the valuable information that you offer. I was told about 6-8 mos ago I nd to be on Vit d w/calcium. Unfortunately, so much damage had already been done ;( I wish I had known this soooo long ago and I blame the doctor that I was seeing for pain control, as he prescribes my medications...ugh I still am learning so much info when I come here that it's hard to hold it all in my brain! I need to keep a little folder w/info in it. Again, thank you, thank you for your words of wisdom ;)

Should I take a supplement for low vitamin D, my levels are low and so are my daughter's?



Ann A. said:

Thanks Unshoreandscared - just remember that if my vitamin D levels had not gone into the tank (because of the kidney surgery and broken leg), I'd probably still be working. LOL



Unshoreandscared said:

Thanks for the post, you are my hero Ann... Keep the positivity coming... You brightened my day, I was a bit depressed earlier today. Thank you to Moodance for opening this channel to talk about the problems seen through variety of struggle for lupus.

http://youtu.be/ALcdFAAojt4

dear dear friend, your situation is awful and awfully familiar. Is it just me or are we all expressing a similar theme: we finally do the work we love or have the haouse we always wanted or the relationships or whatever...for me it was being a yoga teacher.

I had wanted to teach yoga ever since my first foster mother taught me a few poses when I was 12.

then came love then came marraiage then came the baby with the baby carriage.

then it was 9-11 and i decided I better do what I want with my life is case I don't have it later on. So instead of finishing a degree in English I finished the semester and devoted the rest of my time to yoga...studied the type of yoga i liked and that was required for teacher training and then did it...and loved it...and was fairly good at it. and then along comes Lupui...yeah yeah... Oh .yeah, I was sick as a dog and had to give up everything I'd worked for and then the worst thing happened---every woman with an eating disorder's worst nightmare...I got fatter and fatter. O Prednisone, my prednisone if I could just leave you alone.

you see the theme?

Are we Lupites some kind of flower that requires growing into the beings we thought we were meant to be...then have that layer removed (rather unpleasantly) so that we can become the beings that God wants us to be?

As odd as it is, I like His way better.

hang in their, my sister in this time and space; here they come...just wait....here come better days. till then, i am here and i am so glad to have you for my friend